I'm the mother of Ralph, born April 29, 2007 with meconium aspriation syndrome and an atrial septal defect. He developed pulmonary hypertension as a result. He also has Down Syndrome. Ralph has 7 brothers and 2 sisters. These are our stories...

Friday, April 29, 2011

I can't believe that he is so old and so big. He really is mommy's big boy these days. When Zhen starts playing with the TV cabinet, Ralph grabs him and drags him away so he doesn't get into trouble. He is working so hard to learn how to speak properly. He knows his alphabet and how to sign each letter quite well. He can sign his name. He's learning to use the potty!!

In a way though, it seems as if he has always been with us. I can't remember, and I don't want to remember, what life was like before Ralphie. He has inspired me from the moment he was born on that beautiful, chilly night.

If not for Ralph, we would not have a Theo or Zhen in our family. We would likely not know much about the desperate situation of children with Down Syndrome in Eastern Europe or the genocide of babies with Down Syndrome in the United States and other developed countries.

I'm just so happy to be Ralph's mom. I'm so proud of my little rock star. He's come a long, long way!

Tuesday, April 26, 2011

We both had a rough night. My problem was simply a 2nd night of recliner sleeping. Pretty sure I'm too old for that. Theo's problem was that he napped yesterday afternoon and didn't want to go to sleep.

Theo did his rocking the squeeky metal crib trick for a long, long time. I held him in my lap for a while, but I was afraid I'd go to sleep and he would take a dive. Then he cried, and rocked...rinse...repeat.

Somewhere along the line I fell asleep. When I woke up, Theo was wearing an oxygen cannula, had IV fluids going and, GASP! TAPE ON HIS FACE!!

I go a little nuts when I have a child in the hospital. I've written about it before, a long time ago. First of all it was silly to put oxygen on him. He has airway issues and sometimes needs to be repositioned. In fact when I woke, the cannula was sitting on top of his nose and his oxygen sats were just fine. I made certain to point this out to the nurse.

Second, Theo can't have tape on his face, his skin breaks down so easily. He's a delicate little Ukrainian prince, ya know? I asked for some adhesive remover pads to get those damned oxygen stickers off his face. It's 5:30am. Are any of you overly friendly at 5:30am? I didn't think so.

About an hour later his IV fell out of his arm! Weird. Who would believe me that it fell out? haha!! Figures. We left it out. Baby steps closer to escape.

So, today should be the day that Theo comes home. We waiting on one more lab test to come in and then we are outta here!! I NEED to be home. The place falls apart without me. And everyone misses Theo. Ruby was so glad to see him this afternoon. Those two are best friends!

Monday, April 25, 2011

He had been running fevers off and on for a couple of days. A dose of ibuprofen and he would be good to go for the rest of the day...sometimes well into the night! Yesterday was different.

James and I were at church for all three services so grandma sat at home with Theo for us. When we got home, she told us that he had slept until 11am and then didn't want to eat when he got up. She was rocking him when I walked in. He looked odd, but I couldn't put my finger on what was different.

There was no time to get an Easter dinner on the table in time for our hungry crew, so we went ahead and took Theo and the rest of the kids out for Chinese! Nice Easter dinner, huh?

I held Theo for a while and he was heavy and floppy in my arms. But, when he saw my plate of food he sprang to life just long enough to grab some mushroom beef and stuff it in his mouth! I decided to put him into a highchair so that I could sit less than three feet away from the table to eat.

Theo kept slumping over sideways in the highchair. I would straighten him out and he's start crumpling over again. Occasionally his eyes would roll back. He didn't look good at all. Not only did he not look good, he looked different in a way that I couldn't quite figure out. His face. Hmmm.

He was so limp in my arms when I lifted him out of the highchair to go home that I asked James if we should take him to the doctor. He was breathing strange, too...a couple of regular breaths and then he would stop...and then come up for air a few seconds later. Why does stuff like this always happen on a weekend?

As soon as we got the crew back home, I put a call into our doctor's nurse line. She recommended that I take him to be seen. So I put Theo into a nicer, cleaner pair of jammies and headed out to the minor emergency office, all the while wondering what they would think of this 24 pound almost-five year old child with Down Syndrome.

Can you guess? Yep, the minor emergency office was closed for Easter. Dang. I would have to go to the hospital ER and pay a $200 co-pay. Ouch, right? But, for Theo it's nothing. :) The cool thing was that the ER was dead and we got right in. I was acquainted with the ER physician, that was also nice.

Looking at Theo lying on the big white cot I suddenly noticed the delicate line of his jawbone. He looked different.

He was hooked up to an O2 sat monitor and I was shocked to see him in the upper 80's. Not cool. I asked the nurse to start him on oxygen right away. She agreed with me. I went to the waiting area while they started an IV, drew blood and did a chest x-ray. I've seen enough medical procedures and I don't have anything left to prove. I can't stand to see him hurting. As it turned out, one of the blood samples clotted too quickly and had to be redrawn. I stayed in the room this time and he only grunted a bit while the vampire rooted around for a vein. Poor sweetie.

This is getting long, but I don't want to forget these things. After Theo's IV was started and he had a couple bags of fluid pumped into him he started to perk up. Then it dawned on me...his face. It was pink and plump again. I could no longer see the obvious line of his jawbone. That bony jaw was looked like it did when we brought him home in emaciated condition.

Theo weighed 22 pounds yesterday at the ER. He was 25 pounds in Kansas City two weeks ago. That just goes to show how fast a little guy like Theo can go downhill. He was in shock when we arrived at the ER. I'm more frightened now than I was at that moment, now that I understand what I was seeing and couldn't process.

Here's the best news of the day, and I firmly believe it is because of all the prayers on his behalf: Theo is doing great!!

He's been moved out of ICU to the pediatric floor. He's not hooked up to a bazillion monitors and oxygen anymore. He's just been snoozing hard. God willing, his bloodwork improves some more tomorrow and we can go home in the afternoon. Please let it be so!!

Wednesday, April 20, 2011

Tonight I took Ralph to an event at a church that we do not attend. Lots of families with children were in attendance. Ralph was very well behaved at first. He sat on the floor next to his brothers and paid attention to the speaker. Such a big boy!

Then I noticed it.

Next to Ralph and his brothers sat another little boy, probably 6 or 7 years old, who was staring at Ralph. This boy looked puzzled. I could almost see the gears turning in his mind.

I found myself staring at the boy who was staring at my son.

Intrigued, I imagined what he might be puzzling over. I wondered if he had ever seen a person with Down Syndrome. My guess is no. I'll bet that Ralph's appearance was just barely different enough to make him wonder, "what is wrong with him?"

I watched him watching Ralph for quite a while. Then it happened.

He got caught looking!

Ralph caught him. They locked eyes. After a pregnant pause Ralph busted out his best and biggest smile, the one where his eyes turn into little crescent moons, and he waved "hello!" to the other little boy.

This dark, mean old world needs Ralph and more people like him. He's not an angel. Close, but not quite. Still, he's breathtakingly open and friendly.

I'm going out on a limb and proposing that people with Down Syndrome make the world a better and more loving place. More fun for sure! That's my experience anyway. Check out Ruby and Theo and let me know what you think:

Wednesday, April 13, 2011

Theo, Ruby and I are home from Kansas City. We had a pretty smooth trip if you don't count two babies not sleeping on Sunday night.

Monday morning was tough. More waiting around than anything else. When Theo was taken back for his procedures, Ruby and I hightailed it to the snack shop. We were starved after three hours of waiting. Before we were even done eating, the doc was back with his report. Yeah, we waited around for three hours for 20 minutes of procedures!

OK, to be fair he did have some other things done after the doc was finished. And then another hour in the recovery room. I got a phone call from the recovery nurses. They couldn't figure out why Theo was so upset. I should have insisted on being with him immediately when he woke up. Why didn't I think of that? So, I told them to give him something to eat. That one surefire way to calm him down. He ate two pudding cups and drank a cup of juice before I got to see him. His little tummy was all big and hard. I thought for sure he was going to throw up. But no. So we left.

We drove back toward the hotel, but I needed to find a pharmacy to get some Ibuprofen and melatonin. No way was going to handle another sleepless night. We played around the hotel room for a few hours. Theo and Ruby were playing peek-a-boo with a baby blanket and I was making videos with the webcam on the computer when Theo finally threw up...on my bed. haha!! It figures, doesn't it?! Yeah, I caught him with the camera.

Theo had a quick appointment on Tuesday morning and then we headed straight for home. Our babysitting situation worked out. It wasn't ideal, but we all survived, right?

I wish we could just move to Kansas City so my boys would have everything we need at hand. These trips are getting old.

Sunday, April 10, 2011

Against my better judgement, I took Ruby and Theo to McD*nald's tonight. You see, we are on the road. Theo's having some medical procedures done early in the morning at the big city children's hospital.

So, after 3 1/2 hours in the car, I wanted to make sure that Ruby would go to sleep at a decent hour. Hence the playplace! And yes, it was a disgusting as I imagined that it would be.

Blech.

I did have an interesting conversation there, though. I sat down next to a grandma with three of her grandsons. The grandma left the room to buy them some H*ppy Meal toys. One of the boys asked me why Theo was making funny noises. I explained that he spent 4 years in a lonely crib and made up funny noises to keep himself busy. The boy then told me about the baby in his mommy's tummy. :) How sweet!

He told me it was a boy and that would make four boys in his family. I told him I have 9 boys and two girls and his eyes about popped out of his head.

I nearly fell off my chair when he immediately asked me if I was a Christian. How about that? What a cool kid. I had fun chatting with them and grandma until they left. I'm glad I went to that nasty place after all. :)

I'm trying to get the Ruby and Theo to sleep now. We start early in the morning. Theo also has an appointment at the big city children's hospital clinic on Tuesday morning. But I'm having a babysitting emergency at home.

If I cannot secure a sitter for Tuesday morning I'll have to cancel the Tuesday appointment and head for home. Not looking good so far. If you are in my area and have suggestions, let me know.

Saturday, April 9, 2011

I was so focused on cleaning up my kitchen yesterday morning, but I kept getting interrupted...in the good way!! I had some interesting and eye opening phone calls and chats with some very good friends. I didn't get many dishes done, but oh well! They'll keep, right?

I didn't have to worry about getting the kids ready for school so I talked and I chatted away. Ralph and Zhen only have school a few Fridays each month. And since Ralph's IEP was scheduled for 3pm I figured there was no school.

Closer to lunch time the phone rang. It was the elementary school nurse. By the tone of her voice I could tell something was wrong. There was an accident in PE class and Thomas had his teeth banged on a classmate's head. She had looked at him initially and sent him back to class, but he was back in her office complaining. I told her I'd be up to get him in a few minutes.

Then the phone rang again. It was the transportation department. Ralph and Zhen's school bus was out front waiting for them. WHAT! Oh dear! I had assumed there was no school today, but I didn't actually check the calendar.

Well there was no way I would get their shoes and braces on in less than 20 minutes so I sent the bus away with profuse apologies. I sat down and worked on shoes and loaded them all up in the van to go to school. They were only a minute or two late and the director even walked them into the building for me. Ralph wouldn't go in, though! He needed to see me drive away first I guess, so the director stood outside with him waving at me until the van was out of sight. Cute!

Then we drove over to the dentist's office, which is closed on Friday by the way. We called the emergency phone number and the dentist and his wife were there within 20 minutes. How nice! Thomas got an x-ray, which revealed no cracks thank goodness! But, one tooth was hanging very low and had been pushed in so that he could not bite down.

I watched while Dr. Coad glued Thomas' front teeth together with a big strip of enamel colored goop. It's kind of like buddy taping a broken toe. haha! We'll go back in about 10 days to have those teeth looked at again.

I was out of groceries, so we took a little trip to the store before taking Thomas back to school. I end up getting home with twenty minutes to shower and dress for Ralph's IEP meeting. No way! So I throw on a little extra deodorant and some damp jeans and head out the door again.

I'm thankful that Ralph is a good student and is making great progress. I feel like I'm on the same page with everyone on the team so his IEP's have gone smoothly so far.

After the IEP I have to go to the home improvement store to return some extra materials from our fence project. My HOMY had them all loaded up in the van for me. Wasn't that nice? So I returned the stuff and then went looking for some items that he needed.

This is where it gets funny. He could have just gone to the store himself, but no. So I called him no less than three times to make sure I was picking out the right things! There are 7 different kinds of concrete? Which one do I choose? How long does the drill bit need to be? Will 9/64" be ok because the 1/8" comes in a 2 pack and costs twice as much? And so on...

Anyway, it was a busy day. I put out a few fires, screwed a few things up, inconvenienced a few people, made some people mad, and helped some others. Pretty much like every other day of my life. I'm glad it's over!

Wednesday, April 6, 2011

After watching Theo take steps yesterday I had a change of heart. He is a big boy now and he doesn't need to have babyish long hair anymore. So I set him in the highchair on the back porch and started cutting. First with scissors and then finishing up with the clippers. This is how he ended up:

Tuesday, April 5, 2011

This is the thing that drives me the most nuts...Zhenya is attracted to our air vents. He gets in trouble every single time and he goes back for more. Like a moth to a flame.

What is the payoff for him? He's got to be getting something out of it or he wouldn't go back to them time and time again.

I have to keep furniture on top of them so he can't get the covers off. The leg of his crib normally sits on top of the vent in his room. I didn't like the crib there so I moved it the other day thinking perhaps he had forgotten his naughty obsession. Nope.

I just got done pulling a boatload of toys out of the duct. Why would he stuff all those toys in there? I'm just irritated. And bleeding.

I have a choice to let petty things like this drag me down. It's not the only petty thing on my mind. They distract me from my true purpose. Perhaps I'm more like Zhenya than I would like to admit.

I know that I should not dwell on minor irritations. I can not control the actions of other people whether they are 4 years old or 44. But I can't seem to help myself. I gotta fix things. I never learn.

So I'm going to attempt to treat Zhenya and others the way my undoubtedly irritated loving Father treats me...with large doses of grace and unconditional love. That's probably the only way to fix things.

Monday, April 4, 2011

Thanks to my hard working HOMY (husband of many years) this fence project is DONE! Phew! Now my children and dog can safely play outside without getting "lost" or "visiting" the neighbors.

Outside.

Inside.

It is difficult to see but the back is chain link. Even from the house it is barely visible. I can't wait to train some roses or vines to climb that fence.

There is just one problem...the wind. Yesterday and today have been extremely windy, even for our area which is a very windy area. Last night a storm rolled through and within hours of being finished, one of the new gates was destroyed. Isn't that disappointing? So next weekend will be all about shoring up the new gates and spreading some fill dirt in some low lying areas around the security perimeter. (I didn't want to type the word fence one more time.)

Some other things got done last weekend as well. We finally have our water well hooked up to power. Now I can water the lawn and fill baby swimming pools without inflating our monthly water bill. Just in time for watering and splashing season!

We also tested our A/C yesterday. Yes, I was ashamed to admit it, but the house was hot and we were all working hard so we turned it on. Cra-zay!! Today it's not even 50F outside. Gotta love springtime in Kansas.

Friday, April 1, 2011

Daddy said she could not have a pony. Just kidding! If Ruby ever asks her daddy for a pony she will most likely get one! SHHHH!!!! My three afternoon schoolboys, waiting for the bus. After many wet, gloomy days this week we finally got a taste of Spring. I didn't plan to dress them all in blue and red. It just sort of worked out that way!

Something BIG is going on here this weekend. Actually for the past few weeks...it's going slow but finally picking up steam.

Can you guess?

I picked up this nifty staple gun from the rental place this afternoon. I like the feel of power tools in my mitts! There would be 10,000 staples in that little box. Wow!

This pallet of stuff has been sitting for a month! Our order was shipped incomplete. :( This caused a HUGE problem between us and the home improvement store. HUGE. Trust me.

Hey look! Isn't that purty?

Jordan told me last night that our new fence looked good but that Ralph would just climb right through it! haha!

It's not done yet, but almost!! I'm so excited! Ralph ran away three times a few weeks back when the weather was very nice. He's just very independent and likes to "visit" the neighbors. Our neighbors don't appreciate this as much as he thinks, so this layer of backyard security is way overdue.

I'm still looking at options for front yard security. I'd like to have several layers if you know what I mean!